Coping With Special Needs Stress! Sorry- long moan

[JAKBROWN]

I'm new to Mumsnet but having read through some of the conversations on the special needs board it seems there is a really great group of experienced mums here. I've got a little girl who's nearly 4 with SN and a little boy and I feel as if I'm going completely mad at the moment. For the year after diagnosis, I seemed to cope well. So busy getting things in place for dd who is now doing home therapy I didn't have time to get 'depressed'. But recently I find myself feeling down (which isn't very me- usually annoyingly upbeat!). Just feels like everything is too much. Feel as if I can't do enough for my daughter, then stress of making sure my son gets enough attention, fretting about it all all the time. House if full of people constantly- specialist nurse, therapists etc. House a wreck- haven't even changed the lampshades since we moved in as been so busy drowing in special needs stuff. Husband at work all the time- career going really well and feel as if he is generally disengaged from family and SN daughter. Also feel irrationally angry at parents without SN kids who 'complain' about things like their child not being as advanced as another etc etc. Am turning in to a misery. Is this normal? Will I come out the other side?!!!!! Sorry to moan on...

Jak, my DS is at TreeHouse and I've just been moaning about how stressed the school moving has made me! And a new headteacher who I'm not sure about...... if you want to know anything about it please CAT me. On the whole it is a great school but nothing is perfect......
Marks out of 10 Lou?
Just thought, the few new MNers we've just got might not know about the next SN meet-up, provisionally planned for 12th Nov, maybe at the Royal Academy (I'm going there anyway!)

I will review your posts and submit my marking shortly.

Still not sure I can make that meet up btw, probably not.

Ah! Well, we don't live in London anymore but heard such good things about Treehouse. We have a very good autistic unit attached to an SLD school here and they do use some ABA principles but they don't get much one-to-one. A group of parents have tried to set up a school similar to Treehouse nearby but the LEA are being absolute **. Anyway, will CAT you.
Meet up sounds great!

Well, ds1 is proudly admiring what he calls his "chicken spots" and bravely declining camomile lotion. Ds2 is just grizzly, hyper and spotty. I'm the one who can't stop scratching.

The fun will start when ds1 realises that he's not going to school tomorrow. Aaaarrgghh!

Oh poor you, coppertop. Sounds grim.

Hi Everyone

I'm new to Mumsnet too. My ds2 is 13 months and whilst he is lovely and smiley, he is very, very passive. He has only just started to babble a little (mum, mum or row row)and is silent most of the time. My little sweetheart also only has one kidney and is showing no signs of crawling or pulling up/cruising. He is being seen by a range of specialists (phsyio,SALT and has had tests to check his chromosomes), so I know that his needs are not being overlooked, but sometimes I want to scream what about my needs!' I have been given tasks to do with ds2 from both physio and SALT, which feels very positive, but sometimes I feel that my anxiety gets in the way of helping him. Anyone got any tips on shaking myself out of those doldrums? Also, how do you get involved with support groups? No-one has suggested them to me at all - presumably because the jury is still out' over ds2? I also have a ds1 who is a very bright `normal' boy who is seven. Have any of you got any experience of talking to older siblings about your concerns/anxieties over their younger brothers/sisters? Any help would be much appreciated!

Jak, I agree, would make a fantastic and invaluable book. Just reading the posts on here bring tears of recognition and total understanding for what everyone's going through. I'm pretty much over the initial shock to the system but after five years, it's still very, very hard.

It is true that the professionals don't seem to appreciate that mums need support too, especially after the initial diagnosis. If you have a supportive family network that can ease the burden but I have found that alot of the time it's your close family who cause the most stress and anxiety simply because they refuse to accept the diagnosis and are convinced that you just need to pull yourself together.

Merlot I have enough truble explaining ds1's problems to ds2 - who has lived with them all his life- in other words they're his normality- must be extra hard the other way round.

Agree with daramum as well- my mum is spectaculour - but I know from friends that's very rare

Yes, its difficult with ds1. I'm sure he has twigged that all is not right with ds2 as he has begun to ask whether ds2 will ever walk or talk (talk about a tearjerker!) I have been giving a non comittal upbeat response about children all develop at different rates, but he recently has been asking to watch his own baby videos, so I think he wants to make a comparison (something I cant face doing myself!)

After next visit to Dev Paediatrian, I think we will have a proper' talk. My mum and dad are great with ds2, but every now and then mum says looking at him you'd think nothing was wrong', which just makes my heart bleed (I've actually asked her to stop saying it!)

Any thoughts about those support groups?

Merlot you could have been me when my dd was 13 months (except she was my first) I felt completely lost and yes you are right, people always say 'well there looks nothing wrong' Which is confusing for you, as you want recognition you are not imagining it but always want it not to be happening (if that makes sense!)

have you been refered for physio yet?

I would also ask to be refered for 'portage'

portage

this is a home teaching service. they visit for an hour a week, but there is a waiting list. they run support groups, i met a few people through our old service. As far as other support groups go, how about through SN boards on internet sites. Is there anyone on here that is close? Where are you? We are having an SN meet up again soon, you are more than willing to come.

Thanks everyone for your words of wisdom, and thanks for the tip about portage Snmum - I'll definitely bring that up at the next review. Yes we are seeing a physio who is lovely and very upbeat, which is great (she is managing to see the small improvements `he'll be over onto his knees really soon', whereas all I keep noticing is how behind he is - just wish I could be half glass full instead of empty, if you know what I mean). I live in the Guildford area, but not quite sure how you find out where other mumsnet members live? Any tips? By the way, how is your dd1 now, snmum?

well my daughter is 5 and has moderate global development delay (undiagnosed) and microcephaly (which obv makes the development slower). She crawled at 16 months though and walked at 23 months. i think the physio really helped her to that. She now runs (although it is a funny run! ) can throw, catch and kick a ball. She signs, uses PECs, says single words, and even two word sentances that is good. She still has a lot of problems and always will have. i think that is the scariest thing when they are first diagnosed/start to have problems because you have no idea how things will pan out. We know some children who started off with very severe delays who are moderate/mild end of SN now and children who were mildly affected who are severe end now. You never can tell, although alot of this is to do with the 'actual' diagnosis given.

With my dd she makes small and steady progress, which is fine by me, she is very happy. it breaks my heart too though sometimes, i wont lie.

Sorry if i have waffled on! There is a thread on where SN mums come from, i will try and find it!

and Merlot, I KNOW there is someone who posts on here who lives VERY close to you!

Thanks so much Snmum for your support and sharing your daughter's story with me, it really helps . I guess with me it is very early days, and as you say, at this stage it is frightening even thinking about what the future holds - just got to keep focussed on the present and my eldest son is helping with that, what with all his clubs and homework!

Ooh, that would be me Merlot, what do you want to know?

merlot, I assume there's more to it than just not cruising/walking and not speaking at 13 months? My DD who is 19 months today is only just walking more than crawling and still wobbly. She also was nowhere near speaking at 13 months. Not trying to say you're wrong, obviously you're already getting help, just wanted to know if its more complicated than walking/talking?

Ah reading this,has made me think of my ds! Although he is only just 5, I have told him from an early age that dd has DS. He doesn't really understand it but I tell him that because she was born with DS there are some things that she will need extra help to achieve-like walking/talking. Over the summer holidays he very kindly "helped" teach dd some of the Jolly Phonics he knew from school.
A few months ago he woke up in the middle of the night really concerned about the steps in the garden. "Oh Mummy, what are we going to do?" he said. "We will have to get rid of them and put in a ramp!"[ah bless emoticon]
I wouldn't mind but it's taken DH 5 years to knock out the old ones and build some "safer"ones in the first place.
The thread has moved on some what but I thought that I would share with you all a nice side of a sibling's understanding of SN.

Hi again. In response to Davros, I guess the health pros are looking more carefully at ds2's development because in addition to his own difficulties he has a paternal aunt (now 42 and living independently) who is partially deaf and has had moderate learning difficulties. Also we have discovered that my husband carries a balanced inversion of chromosome 15, which can cause problems when reproducing (although we thought we had all this tested for when I had a CVS antenatally).

Thanks Dingle. I guess Kids are more mature than we sometimes give them credit for. I'm just walking a fine line between letting him know we have concerns about ds2 and not trying to frighten him with what the future may hold.

Lou33 is it you that lives near Guildord?

Dingle, that's so lovely! My little ds is so sweet with my DD- he always wants her to have what he is having and seems (so far!) to understand if she walks over his train-set/sits on him etc. Merlot, good luck with it all. It's really hard, going through the whole process of trying to find out what's wrong. Interesting about your ds's paternal aunt. My DD has a paternal uncle (sadly now not with us) who had moderate learning difficulties. He hasn't been tested for any chromosonal things, however.

Yes indeedy merlot . Can I be of any help?

Just wondering whether there are any support groups in the Guildford area? We live in Elstead (near Godalming), so could get to anything in or around Guildford. I did think about the gymbabes/tumbletots route, but you guys out there have confirmed my worst fears! Not quite sure what there is out there for mums/carers with children who are showing developmental delays - just know that I cant face the local toddler group again!

I live near godalming too. There are a few netters who do, but I think I am the only sn one.

Why don't you cat me and give me some background info and what you are looking for, and I will see what I can come up with?

Cheers Lou will do